Starting week Four

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1
So today starts week four of treatment for both radiation and chemo. Here's to approaching the middle of chemo! I know it's not the middle of radiation, because I'll cook for a couple weeks after, but it's still nice to mark some milestones!

The lump of coal in my throat comes and goes. It turns out part of its return was the return of the fungus party. Like kids at spring break, one party just wasn't enough! I was barely off the Diflucan when it started up again, so I will either be on this or something stronger the entire treatment. I'm eager to see if it calms down in another few days, or if I have to switch medicines.

My doctor gave me liquid vicodin, although I don't think I need it quite yet (but it's good to have handy for when I do). I'm thankful and feel lucky and blessed, honestly, that I'm doing so well. The pain isn't bad (just taking Aleve occasionally, and Vicodin every couple days), I think the MuGard is holding off most (all?) of the mucositis, and I'm still swallowing just fine. My saliva is super thick and I think a little mucus is starting, but I'm still able to choke down the Mucinex horse pills and I have the melts ready for when I can't. My blood counts at the last chemo were all still normal.

I'm eating a mix of mouth and tube right now because I finally had to get over the mental block of not being able to eat. Now, if my stomach growls but I don't think my throat can take the thick liquid (the thrush makes me gag a lot), I use my tube. I'm very glad I have it! There is NO WAY I would be eating nearly enough calories without it, but then again as I said before, I have a high number of calories I have to consume just to maintain. I'm a little below maintenance, but the weight loss seems to be a couple pounds a week at this point which is definitely not bad considering!

The only real complaint I have is waking up every two hours all night with a burning at the back of my throat. I think it's the radiation spots on my soft palate burning and hurting from being dried out. I tried Biotene spray but it burns like mad and the mint makes me gag. I ordered some Stoppers4 after seeing it here, but the nurse recommended I get plain glycerine from Michaels or another craft store (I'll probably just get some on Amazon). Sipping water helps me get back to sleep, but I'm only getting about 6 hours a day now and I suspect I need more to heal well.

For folks a little behind me on the treatment train: you can do it! Don't hesitate to connect every day with your nurses and doctors. If you're struggling with something, ask! They want to help and have all kinds of tips and aids for you.

Phrannie, how are you doing? Welcome to week 3! :-)

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    use a humidifier
    get yourself a mist humidifier and use it until you need to. I also used OTC sleep meds on and off. They work fairly well most of the time. You are halfway there, keep on going, great attitude on your part, it's doable!
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I'm following right in your footsteps, Laralyn... :)
    Like I said before...all except the fungus party :). Having hubby pick up some Mucinex for me today to have on hand, and some chapstick (going thru that like crazy).

    The MuGard seems to sooth the mouth sores...I only have them along the edge of my lips, and it stings like crazy when I put it in my mouth...but that ends and soothing numbness follows.

    I'm feeling the effects of rads on my soft palate, too...that's the only "sore" part of swallowing, so I'm still eating regular food, and backing that up with an Ensure Plus. I haven't lost any weight at all...phew. I did practice with my tube last night, tho...I decided to get a feel for that now, while I'm feeling pretty good (and I do feel good). The amifostine kicks my butt on a daily basis, but only for a few hours after...by 6 or 7 in the evening, I'm back to normal...

    You seem to be hanging in there wonderfully well....REALLY...and you give me inspiration and strength......and information for my upcoming week. I've been doing what you do...I need "leadership", that's no lie. Having you immediately ahead of me in this has taken the top place in my gratitude list.

    p
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    once you treat the thrush
    the diflucan can be used as a preventive. take one every three days.



    Pat
  • Greg53
    Greg53 Member Posts: 849
    #5
    longtermsurvivor said:

    once you treat the thrush
    the diflucan can be used as a preventive. take one every three days.



    Pat

    Go to sleeeep......
    You definitely need sleep to help heal.

    Melatonin is a supplement (believe it's a natural hormone) that helps when you can't get to sleep. I used it and still do on occassion. It worked great for me.

    Greg
  • jtl
    jtl Member Posts: 456
    #6
    It certainly is not easy, in
    It certainly is not easy, in fact my ENT said before I started any treatments that scchn is not the worst cancer to get but it may be the worst to treat. He was correct. It helps all of you that are early on to bond and share stories. My little sister is a breast cancer survivor and she still corresponds with friends that she met 10 years ago.
    John
  • CajunEagle
    CajunEagle Member Posts: 408
    #7
    Dealing with "Horse" Pills.
    Got a mortar and pistol to crunch up the big ole pills, and mixed them with liquids to use with the feeding tube. After my tube was removed, I obtained an over-the-counter spray lubricant for the large pills called "Pill Glide". Good stuff, and come in flavors of Grape or Strawberry. May be a little early in y'all's treatment to try it because it's somewhat sweet, and may interact with that Thrush mess. Gad, I hated that stuff. Hang in there.

    Larry
  • Laralyn
    Laralyn Member Posts: 532
    #8
    CajunEagle said:

    Dealing with "Horse" Pills.
    Got a mortar and pistol to crunch up the big ole pills, and mixed them with liquids to use with the feeding tube. After my tube was removed, I obtained an over-the-counter spray lubricant for the large pills called "Pill Glide". Good stuff, and come in flavors of Grape or Strawberry. May be a little early in y'all's treatment to try it because it's somewhat sweet, and may interact with that Thrush mess. Gad, I hated that stuff. Hang in there.

    Larry

    Thanks for all the tips!
    This place is really priceless and special. I feel so lucky to have found it!

    Hey, Phrannie--thanks for the kind words! Knowing I'm helping you helps me too. :-)

    Let's all try to get the word out on MuGard. Their interim trial results on HNC patients look really promising, and I do believe it is helping me!

    http://markets.on.nytimes.com/research/stocks/news/press_release.asp?docTag=201204170830PR_NEWS_USPRX____NY88414&feedID=600&press_symbol=42293
  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    Laralyn said:

    Thanks for all the tips!
    This place is really priceless and special. I feel so lucky to have found it!

    Hey, Phrannie--thanks for the kind words! Knowing I'm helping you helps me too. :-)

    Let's all try to get the word out on MuGard. Their interim trial results on HNC patients look really promising, and I do believe it is helping me!

    http://markets.on.nytimes.com/research/stocks/news/press_release.asp?docTag=201204170830PR_NEWS_USPRX____NY88414&feedID=600&press_symbol=42293

    I KNOW it's helping me!!
    I've been using L-Glutamine, also..........but it's the MuGuard that I do fist in the morning, and last before bed...numbs the sores, and they've gotten smaller and less painful...I only have them right on the inside of my lower lip (I swear, I thought my lips were for smiling and for kissing......who knew they did so much to keep me from drooling...LOL)...

    p
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #10
    phrannie51 said:

    I KNOW it's helping me!!
    I've been using L-Glutamine, also..........but it's the MuGuard that I do fist in the morning, and last before bed...numbs the sores, and they've gotten smaller and less painful...I only have them right on the inside of my lower lip (I swear, I thought my lips were for smiling and for kissing......who knew they did so much to keep me from drooling...LOL)...

    p

    Cheers to the strong ladies!!!
    Wow ladies, you sound great. Just think of the folks coming behind you and reading your posts with all that energy and "take it on the chin" mentality! Truly you ladies are great!

    I used "ativan" which is a type of medicine to relax your body (it truly helped me sleep as well as eased my throat from being so "swollen". I also took 1 or 2 tylenol PM (but be careful to not get to much aceptophedamine (not sure on the spelling but too tired to get up and look at a bottle, ha)

    I was prescribed Narco for the pain. So basically my evening cocktail was 1 narco, 1 ativan and 1 tylenol PM ...I must say I slept quite well. Woke up often with that same dry throat...I rigged a bottled water cap with a hole to put a straw in it ...then rigged that up to hang / set beside my bed where I could easily reach over and sip out of it through the night (I figured that out after two water bottle spills during the night and having to get up and dry out). (I liked Dasani water because the big city water did not taste as good as my little town water :)

    Living 100 miles away I borrowed an RV and stayed in the parking lot of the MSTI clinic (they offer RV hookups at no charge in the parking lot). I will confess I did not tell the doctors I was by myself (they said I had to have help with me during treatments) ...fro the first four weeks....then suddenly I found myself in the hospital after becoming waaaay dehydrated and weak from not eating. I had the feeding tube but I guess I was reluctant to use it or somethng ...still don't know why I did that to myself.

    Anyways ladies ...said prayers for both of you tonight....thinking of you as you go on!

    Best,

    Tim & Jennifer Cogdill
    McCall, Idaho
    timcogdill@yahoo.com
    208.630.4842 cell

    I got to figure out how to pm people on this message board ...guess I am not as smart as I like to think! :)
  • Ingrid K
    Ingrid K Member Posts: 813
    #11
    Tim6003 said:

    Cheers to the strong ladies!!!
    Wow ladies, you sound great. Just think of the folks coming behind you and reading your posts with all that energy and "take it on the chin" mentality! Truly you ladies are great!

    I used "ativan" which is a type of medicine to relax your body (it truly helped me sleep as well as eased my throat from being so "swollen". I also took 1 or 2 tylenol PM (but be careful to not get to much aceptophedamine (not sure on the spelling but too tired to get up and look at a bottle, ha)

    I was prescribed Narco for the pain. So basically my evening cocktail was 1 narco, 1 ativan and 1 tylenol PM ...I must say I slept quite well. Woke up often with that same dry throat...I rigged a bottled water cap with a hole to put a straw in it ...then rigged that up to hang / set beside my bed where I could easily reach over and sip out of it through the night (I figured that out after two water bottle spills during the night and having to get up and dry out). (I liked Dasani water because the big city water did not taste as good as my little town water :)

    Living 100 miles away I borrowed an RV and stayed in the parking lot of the MSTI clinic (they offer RV hookups at no charge in the parking lot). I will confess I did not tell the doctors I was by myself (they said I had to have help with me during treatments) ...fro the first four weeks....then suddenly I found myself in the hospital after becoming waaaay dehydrated and weak from not eating. I had the feeding tube but I guess I was reluctant to use it or somethng ...still don't know why I did that to myself.

    Anyways ladies ...said prayers for both of you tonight....thinking of you as you go on!

    Best,

    Tim & Jennifer Cogdill
    McCall, Idaho
    timcogdill@yahoo.com
    208.630.4842 cell

    I got to figure out how to pm people on this message board ...guess I am not as smart as I like to think! :)

    private messages
    Tim, to send a private message to someone in this group.
    First, jot down there screen name.
    Second. go up to the top of this page and on the left in the red boxes, go to "CSN email"
    once you get in there, it is pretty easy to send a message. I will send you one, so you can see where it goes.

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